The Zoromski Chronicles

Wolfie's Visit

2012-01-29T21:55:00.001-06:00

Last week, Ruby was "Wolfie's Friend of the Week" at school! So, Wolfie came to spend a weekend with us.

He was a great house guest!
Ruby was thrilled to have him visit.

He went shopping with her...

and to the car wash ...

and more shopping.
I love this picture, she looks like she's worried he's going to try to steal her popcorn!

Wolfie was very good company -- and he helped bag the groceries!

(These pictures are 3 different stores ... can you tell Daddy takes Ruby on all errands lately?)

But the most important part is that Wolfie got meet Rar-rar!!

Angry Birds!

2012-01-29T13:57:00.001-06:00

When Sarah came to stay with us, she made the mistake of telling Braden she had made an Angry Bird hat for her brother. Braden quickly requested one -- but then it took several hours to choose which color bird he wanted!

Every day when he'd come home from school he'd check on Sarah's progress. Had she bought the yarn? Started the hat? When would it be done!?

Sarah is awesome, and she created this hat AND completed it before she left us for home. Luckily, when Isaac showed up to pick up Sarah -- he had his hat on, too!

Braden, as the yellow bird ... and Isaac as the red bird!

Thank you, Sarah! He loooooves it and wears it all the time (even inside the house) -- and he even brought it to school for Show & Share :)

Dax Pics

2012-01-28T14:36:00.002-06:00

Tolerating his swing

In his new Yoda hat
(Thanks, Cate!)

More Art

2012-01-27T17:37:00.003-06:00

Dax, Sleeping

by Ruby

Ruby the Artist

2012-01-21T20:21:00.001-06:00

Ruby wanted to color tonight. It's been a while since she's asked to color and wow, were we blown away by her drawing skills -- especially drawing faces!

We didn't coach her at all on this, she just started drawing. Below is a video of her drawing, and these are the fifth and sixth sets of faces she drew in a row.

She is picking up so much at 4K -- we can't be any more proud!

Ruby absolutely loves watching this video -- she's watched it three times straight and keeps saying, "Again! Again!"

Links

2012-01-19T07:59:00.002-06:00

Also, since Sarah's better about blogging, I thought I'd just link to her blogs.

Check out Ruby "modeling" for Sarah ... and some pics of baby Dax! Oh, and some pictures from Ruby's point of view, when she got hold of Sarah's camera...

It's going to be very hard for me to let Sarah go home tomorrow! She's been a wonderful help, and just all around good company. I'm so grateful her parents let me borrow her this week! The little girls are especially excited to see Sarah every morning -- they're thrilled to discover every day that she's still here!

Brothers

2012-01-19T07:52:00.000-06:00

I blame sleep deprivation. I was POSITIVE I had posted pictures of Dax with Ruby, with Braden, with Karly, and with Lilya - in that order.

Apparently, though, I had never actually posted the pictures of Braden with Daxton! Thank goodness for Sarah -- she's staying with us this week, and she pointed out my omission.

Anyway -- Braden loves his tiny brother!

Dax's New Trick

2012-01-16T14:27:00.001-06:00

12 days old!

Lilya & Dax

2012-01-13T09:41:00.002-06:00

It took us a few days to get to introduce Dax to Lilya properly. We'd ask Lil, "Do you want to hold the baby?" and in a little voice, she'd simply say, "No."

She didn't want to hold him, didn't want to touch him. She watched him with fascination, but did not get too close. Really, this is probably the first baby she's ever had interaction with since she left her own baby room at the orphanage. The children in her group were about age 2-6, and the babies were kept apart.

She's also been very concerned when I nurse him. She'll come up to me and sign "Hurt?" I don't know if she thinks he's hurting me while he nurses, or if she thinks I'm comforting him because he was hurt? Probably a little of both, actually.

Brian patiently brought Dax to Lil the other night.

She was fascinated, but cautious.

She carefully patted him on the head...

and even gave him some kisses!

Karly & Dax

2012-01-12T21:15:00.001-06:00

She's a fan of him, too!

Dax has dimples

2012-01-11T17:54:00.003-06:00

Just like his dad!

Dax is home!

2012-01-07T14:00:00.002-06:00

We came home this morning, and so far Dax is loving being at home! So am I!!

Things are going well, everyone's loving Dax -- I can't imagine what we did without him :)

Dax & Ruby

2012-01-06T20:03:00.001-06:00

Of all of Dax's siblings, the one who's been most excited about his arrival has by far been Ruby. Braden is happy and proud to have a new brother, Karly likes telling people about her new brother, and Lilya was pretty fascinated with Dax when she visited at the hospital. But Ruby is really, really into hanging out with Dax.

Ruby's visited Dax every day in the hospital (by her request) and today she was super-excited to try to hold him.

It started out with his pacifier in...

... which Ruby promptly removed.

She loved checking out his fingers...

... and his face...

... and his toes.

But when he started to cry, she was happy to give him back to Mom.

Here's a short video of Ru holding Dax, just before she decided it was time to be done holding him:

The Z Family's Latest Addition

2012-01-04T23:17:00.000-06:00

Announcing... Daxton Robert Zoromski
Born: 12:30pm 1/4/12
Weight: 9 lb. 11 oz.
Height: 21 1/2 in.

Both mom and Dax are doing great!

Christmas Gift

2012-01-02T12:20:00.000-06:00

In case you've been wondering what it was that sent Brian out to Wal-mart on Thanksgiving evening ...

it's a trampoline!

The kids are looking forward to getting it set up this spring!

Santa Pic

2012-01-02T12:14:00.000-06:00

Group shot with Santa

(minus Karly, who has decided she's too old for this holiday party now...)

In the News

2011-12-28T13:12:00.002-06:00

In case you didn't see this on ABC News the other night ... this is a piece about a wonderful family who adopted from Ukraine. And, Diane Sawyer actually says "Reece's Rainbow" on national TV!

ABC News

2011-12-26T13:36:00.000-06:00

Check it out! Tonight, ABC News with Diane Sawyer will be running a story about one of the families who adopted from Ukraine through Reece's Rainbow last year!

There's an article already online, and a short preview video:

Hidden Angels: American Families Saving Children With Down Syndrome

So exciting!

Zesty

2011-12-15T08:49:00.002-06:00

My baby is a thumbsucker!

Lilya Singing

2011-12-12T17:22:00.000-06:00

Lilya got off the bus a couple weeks ago, singing a song. A recognizable song that she learned at school, and has added it to her repertoire of songs (most of her other songs come from the Glee cds -- her particular favorite is Defying Gravity, which pretty much consists of her belting out "no moe GAV-I-TEE" over and over)

So, please enjoy Lil's rendition of "Skip to My Lou"

It might actually be that she's singing "Skip, skip, skip, Lilly Lu," since I do call her Lilly Lu quite often....

And I promise, no one is hurting Ruby in the background. She's just whining.

Update on Baby Zesty

2011-12-11T21:22:00.001-06:00

I asked Brian this weekend, "Are we really going to have a baby in less than a month?!" And he said, "That's what people keep telling us..." I'm currently in week 36, and have a scheduled eviction date of January 4th if he doesn't come out before then.

It seems unreal at this point, but I think that's just the business of life. We are actually pretty ready for the little guy to make his arrival. I have weekly doctor appointments, and have for the past month or so for monitoring. Not that there's anything wrong with this pregnancy, it's just precautionary due to past history. We lost Lydia at around 37 weeks, so they started monitoring me (or actually, Zesty), around 33 weeks.

I had an ultrasound around 33 weeks, and he was very uncooperative. Well, he was great for everything -- except for showing his face. I went home without a single picture! He wasn't shy about flashing us, so we have verified once again that he is, indeed, a boy. I have an ultrasound coming up -- hopefully I'll be able to bring home a picture to show the kids. But, on the plus side, he looked healthy and a good size already.

This past weekend we took the kids on a tour of the hospital birth center. It's been completely redone since our last visit there (over 4 years ago!), and Braden kept asking questions about which hospital, and does it have a skywalk? an escalator? so we set up a time to go on one of their tours.

It was our motley crew and then another couple, expecting their first child. She was 3 months pregnant, and they were so sweet and preparing for their first baby (and very nicely dressed) and here we are a few weeks out from delivering, wrangling the other kids down the hallways ... it was just funny. I told Brian, it was like a "Before and After" example.

and I've been promising my dad a picture:

I'm definitely leading with my belly these days ...

Serenading Mom

2011-12-08T20:09:00.000-06:00

I know it looks like these girls are going to eat the MegaBloks...

but they are actually self-made microphones!

This was going on while I was on the phone with a friend, too ... they were QUITE loud

Watching herself in the reflection of the fridge ... Lilya really is her own number one fan!

And a sticker for Ru's nose! Why not?!

Santa Celebration!

2011-12-04T16:13:00.000-06:00

Last weekend was one of our favorite holiday events -- the Santa Celebration! It's put on by the local Sibling Support group, for children with disabilities and their families. It's very fun, low-stress -- and you get an APPOINTMENT to see Santa! No waiting in line!

Here we are, waiting to see Santa (Karly decided she was too old to go with us)

I have to admit, once I sat down, I was a little worried I might have to spend the rest of the party in that couch ...

The official picture with Santa is supposed to come in the mail soon!

The girls were curious, but cautious. Braden was quiet, but hopped right up on Santa's lap (good example for his sisters!)

Then we went in to the party room, and there were DOGS!

Three therapy dogs, in fact. Ruby was thrilled --

she immediately introduced Rar-rar to the dogs.

Lilya did GREAT. Last year, she would see a dog and stop so fast she'd fall over backwards. She was cautious ... but so interested and warmed up quickly!

This friendly (and VERY CALM) lab was her favorite. She spent a long time petting him, watching him.

The other kids moved on to games or cookie decorating, and Lil stayed with the dog for a long time. It was great to see her so not freaked out by the dogs being there!

Ruby enjoyed the face painting! I think it was the first time she wanted to get it done.

She picked out a star, and the color yellow...

and sat so well!

I love this picture of her admiring her new star!

Lil playing ball

Ruby playing a game (knocking Santa off the chimney bricks)

It was a super fun morning!

A Flock of Turkeys

2011-12-04T15:54:00.000-06:00

Made by my flock of turkeys!

I wanted to capture them before they came down to make room for Christmas decorations.

Reece's Rainbow

2011-12-01T10:56:00.001-06:00

We're halfway through Reece's Rainbow's biggest fundraiser of the year! The Angel Tree runs through November and December, and it's definitely been keeping me busy. The ultimate goal is to find families for these children. The financial goal for this fundraiser is to raise at least $1000 for each child. So far, 29 of the children have met that goal -- and 9 more have committed families!

Click on the ornament below to check it out ... and if you donate $35 or more to a child you can receive an ornament like this with the child's picture on the reverse. We already have one on our tree!

Grab This!

Karly's Follow-up

2011-11-29T21:53:00.001-06:00

I picked up Karly early from school yet again today for another doctor's appointment. She has a lot of check-ups, that girl. Today it was the pediatric gynecologist ... because when your 13-year-old has ovarian cancer, you definitely want a pediatric gynecologist on your team.

So now, 4 years later, it's routine and maintenance, which is nice and wonderfully uneventful. The doctor has a new nurse, which lead to a funny moment. She was going over Karly's history with me -- meds, surgical, etc. -- and then stopped with an odd expression. "It says post-menopausal here ... ?" which made me laugh. Because, yes, that is right, and yes, highly unusual.

That's what removing an ovary, 5 rounds of chemo and then 33 days of abdominal radiation will do -- it will push a girl who is just entering puberty right on through menopause.

Then the doctor came in, and she checked Karly over and chatted her up. We had quite a long visit with her, actually -- going over meds and overall health and so on. We'll continue with the hormone replacement patches that Karly has been on for quite some time, as they seem to be working well for her (no more hot flashes, for one thing).

At one point, the doctor told Karly something to the effect of how she couldn't get over how great Karly looked. She said, basically, "when you have a patient that is very sick, that's the image that stays in your head for a long time. And you were a very sick girl - and now you look great!"

How true that is ... and how surreal that we've moved forward so far from that point. I mean, Karly didn't go to school for a full year; and when she started back up, she was only going for a couple hours at a time, a few days a week -- that's how low her stamina was.

Oh, and another odd thing -- Karly doesn't have reflexes anymore. You know how the doctor hits your knee with a little mallet to get a response? None. It's a side effect from chemo. But considering the multitude of side effects that can come along with chemo, this one is definitely not an issue!

Also...

2011-11-24T22:00:00.001-06:00

I'm super thankful for my wonderful husband who braved the Black Friday sale at Walmart for me tonight. I fully intended to go -- there was ONE THING I wanted for the little girly-girls. I realized yesterday I probably wasn't going to be able to go get it, since it weighs over 100 pounds and I'm way too pregnant to lift up more than ... well, I can barely lift the girls these days.

Brian didn't even complain about going in my place, he's awesome!

And you'll have to wait until Christmas to see what the girls get ... but they will be JUMPING for joy ;)

Happy Thanksgiving!

2011-11-24T20:33:00.001-06:00

I'm thankful we're home and together, had a good meal, and I had a good report on the baby at my doctor's visit yesterday.

Definitely preferable to the Thanksgiving four years ago (can you believe that was four years ago!?) when Karly had her tumor removed.

Ruby, the Mischief

2011-11-21T07:16:00.000-06:00

One thing about Ruby, she is highly entertaining. The other night, Brian and I were watching her run around and be her silly self, and Brian said, "We could have a reality show based around Ruby." Yup, I'd watch that show!

Then Braden chimed in, "We could call it Ruby, the Mischief!"

So, that's how Ruby got her new nickname, and it's very appropriate!

Here's a couple recent new tricks of Ruby's ... there were several others lately that we didn't catch on camera.

Cushions from the couch were dragged through the kitchen, dining room, and into the office ...

This bucket used to have a bunch of little dollhouse furniture in it. But dumped out & upside down, it makes a great step! She added a couple magazines for additional height.

and when that didn't work ... it was time to get a chair.

She's also let herself into the garage twice this past week -- once to do a little light sweeping, and the other to just run around. She was promptly returned to the house, since it's only about 40 degrees and she likes to be barefoot.

Oh, then there was the time this past week where I had the girls in the bathroom ... Ruby finished up and ran off. I stayed with Lil to help her get dressed -- and by the time I caught up to Ruby (3 minutes later), she had taken an ice cream sandwich out of the freezer, unwrapped it, and was eating it. Unfortunately, it was only 10:00 in the morning, and she hadn't eaten much the past couple days due to her strep and not feeling well, so I had to be a meanie mom and take it away.

Never a dull moment!

My Poor Little Bird

2011-11-16T10:01:00.000-06:00

Ruby had a rough evening yesterday, but she's enjoying her comfy little nest on the couch (with Rar-Rar, of course!)

2011-11-15T13:55:00.001-06:00

I took Braden, Lil & Ru to their 6-month dental cleaning today. Brian asked if I was sure I didn't want him to take time off and go with us -- but really, having Braden along is so helpful. Braden gets out of the van and goes to the sidewalk, and Lilya will follow him ... and then Ruby will follow, too. They are so much more compliant when big brother is leading the way.

Braden has his first 2 little cavities, so I'll take him back in December, but other than that the visit was fairly uneventful. The dentist wants to pull some of Lil's teeth in the future -- she has SUCH a tiny mouth! And Braden still needs that palate expander for his upper jaw at some point, but it's nothing urgent. We'll see how he does with the fillings, and then move on from there.

All 3 kids tolerated having their teeth cleaned, too -- with the most protest from Lilya, but she was fine as soon as it was done.

Then, we brought Braden to school ... and a couple hours later headed to the pediatrician. This is where I wish we'd had Braden with us still, because on the way out, I had to pick Ruby up from the floor (she was crawling out like a puppy) and carry her, squirming and fighting all the way, out to the van. Not fun ... especially with this big bump of a belly in the way.

Ruby has scarlet fever. I suspected as much, that's why we went in. And I have to say, I'm so thankful we live in a time where antibiotics are readily available!

When I called to schedule her appointment, I was explaining her only symptom was this rash, and it looked like a strep rash ... and the nurse was asking if she had complained of a headache or sore throat. Ummmm... then I realized that to the nurse, I'm just calling about a 4-year-old -- I forget that a typical 4-year-old would be able to say things like, "Ow, my head hurts!" So I told the nurse, "She's not very verbal, she has Down syndrome," and we moved on from there. It just stuck with me, how often I forget. On paper, she's 4; in real life, she's so much more intricate and complex and entertaining than that!

The exhausting part of this tale is that Ruby & Lilya haven't had school since last Thursday, due to a scheduled half-day last Friday and no kindergarten on Monday or Tuesday because of parent-teacher conferences. We've had 5 full days of togetherness, and they are BORED with me and this house. And yet, I had to call her in sick for tomorrow, too -- and tomorrow is a field trip day for her class. Bummer.

Karly had a birthday

2011-11-10T10:06:00.001-06:00

I swear I was in high school just yesterday.

And this week? Karly turned 17. How does that happen!? Can that really be true!?

We went out to eat on Sunday to celebrate and followed dinner with cookie cake and presents.

And yet ... every birthday Karly has reminds us of when she turned 13, and then was diagnosed with cancer shortly afterwards. And here we are, 4 years later, her battle with cancer a distant nightmare.

Happy Birthday, Karly! Here's to another year of good health!!

Karly's Report for Health Class

2011-11-07T16:11:00.000-06:00

Karly had to do a report for her health class and she chose "Down Syndrome" as her topic! Her report was last week, and she said it went well.

I had nothing to do with this, except helping her with the pictures -- she put it together at school, with a little help from one of the aides.

Great job, Karly!

New 'dos for Lil & Ru!

2011-11-05T20:51:00.001-05:00

We took the little girls for haircuts this morning! Brian & Braden came along, so the girls were able to get their hair cut at the same time. Brian stayed with Lil, and I supervised Ruby (i.e. made sure she didn't jump out of the little chair!)

Adorable little punk!

This face = trouble!

Lil was dancing away, it was harder to get her to pose ...

Lovely Lilya

Rubes

2011-11-03T14:58:00.000-05:00

This morning, I got the girls ready to go ride the horses. Ruby bent over to pick up Rar-Rar ... and threw up on him. So, no horses today, and no school for little Ru. She's been fine since then.

But here's an adorable Halloween craft that came home from school!

Ruby as a spider!

On Halloween Day

2011-11-03T08:11:00.000-05:00

Miss Ru had her Halloween party at school the week before, so she didn't wear a costume on Halloween.

Still -- Adorable!

The duck costume we borrowed from a friend for Lilya was adorable and warm -- but it really wasn't meant for sitting down in (or riding the school bus!)

Meet Lilya the Clown

Posing together for Mom!

Costumes!

2011-11-02T23:28:00.000-05:00

Yeah, I know Halloween is way over, but too bad. Cute pics! Must be posted!

I know I already shared that Ruby was Tigger ...

And then Bat-Ruby gave away Braden's costume:

Bat-Braden!

But it was brought to my attention that I never even hinted what Lil's costume was! Lil actually had two costumes -- this was for Trick-or-Treat and the Halloween party, but I didn't let her wear it to school. She couldn't even sit down in it!

I would tell her, "Lilya, you're such a cute duck!" and she'd smile at me and sign "chicken"

Funny girl!!

And this picture because it cracks me up...

This is Lil's "Cheese!" face !

I tried to get a picture of them together before going Trick-or-Treating (Karly didn't dress up) -- but these were as good as it gets!

Maybe not stellar photographs, but very true to life, and utterly adorable!

Sisters

2011-10-30T22:37:00.001-05:00

Lilya went to her first birthday party of a friend at school yesterday! It went well; I stayed the whole time, and she seemed to enjoy herself. The other girls were very nice to her, and happy to see her, which made me happy.

I am glad I stayed, with Lil's limited communication and tendency to wander around. She was very well-behaved, but I did redirect her a couple times to stay at least near the group, even if she wasn't interested in the current activity. But, truthfully, I did a lot of standing around and observing.

But, my favorite part of the day was when we came back home. Ruby ran to greet us at the door, "Lalla! Lalla!" and gave Lil a big hug. Then the girls went outside to play. It was really chilly, but they were out there, swinging. They played, together, for about an hour.

They don't always get along, they don't always want to do the same thing at the same time, but they really amaze us. They have their own little conversations -- they'll be swinging and Ruby will babble something I don't understand, and yet they'll both stop and trade swings.

Brian & I were watching them from inside, and I took a couple pictures through the window. It was just such a moment -- they really, truly are sisters.

Lil, pushing Ruby on the double swing

Overview

2011-10-28T19:36:00.004-05:00

Things have been busy -- the kids didn't have school on Thursday or Friday.
Braden's had a cough for over a month -- no other symptoms. It would start to get better, then come back. Brian brought him in to see Dr B yesterday, and it's some kind of asthma that presents as a cough. Honestly, I haven't even had time to google it, so I don't know what that means other than for now he's on a medication (Prednisone) for a few days to help.
After his appointment, I took the 4 kids and we went to the Lil & Ruby's physical therapy evaluations at the local hospital. They haven't had evals for a while, and they don't qualify for PT at school, so I wanted to see how things were going. No real surprises -- and I'll be able to order new inserts for Lil's shoes (they help give her very flat feet some arch support). The PT thought she could get the insurance to cover a few visits for the girls so we could practice some things; walking up and down stairs without holding the railing, riding trikes - big, gross motor skills.

This morning, Karly had 2 wisdom teeth removed. She's doing great! She's not a complainer, so I've been making sure she takes her ibuprofen on schedule, and icing her cheek.
It was funny to listen to her chatty on the laughing gas this morning (and with a lot of nervous energy). I was in the waiting room, but I could hear her very well. After the doctor gave her the shots, she told the tech, "For some reason, my mouth feels funny," which had me giggling.
She really did well, though, and I'm proud of her -- she wanted to try it not fully sedated, and I had my concerns, but she was super. Now I just have to constantly remind her she can't drink from a straw or eat crunchy food for the next week...

Super Ruby!

2011-10-27T19:44:00.000-05:00

Ruby is going to be Tigger for Halloween ... despite my attempts to turn her into a gnome.

But the other day after her bath, she tried on Braden's costume ...

Complete with tights (so she can't take off her socks at night),

Footie jammies for a cape (that was all her, putting that on over her shoulders)...

And, of course, the Batman mask!

Together -- it's the newest, tiniest crime-fighter in town: Bat-Ruby!

Who's that Tigger?

2011-10-26T10:26:00.001-05:00

Ruby has a costume party at school today (they don't have school tomorrow or Friday).

So, we just tried on her costume, to make sure it fits.

Not only does it fit, it's beyond adorable!

I showed her this picture on the camera, and she said, "It's ME!"

Then she walked into the living room ....

and "introduced" herself to Lilya!

Seriously!? I have never seen her do that before.

She was pretty pleased with herself!

Now, I have to figure out how to get the costume off of her to feed her lunch....

Ruby, the Mastermind

2011-10-24T14:50:00.002-05:00

People with Down syndrome may take longer to learn some skills, and they may have delayed speech or lower muscle tone -- but by no means are they stupid.

I think they are often underestimated, yet most people with Down syndrome that I know are very adept at finding new ways to get things done.

Here's a visual example ...

Usually, there's a chair at the end of the table.

Today, Ruby walked off with it. She pushed it across the kitchen (which she often does, to get into cupboards...)

but today, she went clear across the kitchen ... and into the laundry room.

She had a clear goal in mind ...

The door lock. See that latch hook lock? She can't reach it ... but with a chair! Well, add in a little height and all things are possible!

This is where I intervened. (Mean Mom that I am!)

Hello, Trimester Three!

2011-10-23T15:56:00.001-05:00

I've been meaning to post about this since last week, but what can I say? Life is busy. Over a week ago, baby boy crossed the 28 week mark, and we're officially into the third trimester.
I told Brian, it was like someone flipped a switch. I'm sleeping worse, I'm feeling "Hunormous" (as Braden says) and stairs are not my friend. Sometimes, I have to push myself up to get out of a chair. I don't quite have a waddle yet, but I can definitely feel my balance has shifted and I'm leading with my belly when I walk. I know it's only going to get more exaggerated from here on out, too.
I had a checkup last week, and in the last month I gained -- nothing. Brian & I had a good laugh over that, because I'm definitely growing bigger, but I guess it's just all rearranging.
The plan for now is for increased monitoring (stress tests and ultrasounds) as we near the end. Because of Lydia, they'll watch the baby closely, as we near full term.
Also, because we lost Lydia, we won't go late. So, the first week of January, I'll likely have a c-section (there's always an iota of a chance that the baby will just want to come out early ... but that's not likely. So, most likely it'll be another c-section).
That's new for me -- in the past, I've always counted on my pregnancies going 42 weeks, and then hoped for shorter. This time, I know we'll be sometime during week 39 -- which is exciting! And yet makes me feel completely unprepared at the same time.
I fully expect the next couple months will fly by -- Halloween, Thanksgiving, Christmas, then baby! Busy, indeed. Thank goodness I can do most of my Christmas shopping online ...

Sorry, Nana!

2011-10-22T17:23:00.002-05:00

Just want to apologize to my mother for causing her concern -- I didn't post yesterday, AND I wasn't home today when she called!
Last night, the fantastic Popcorn Wendy volunteered her babysitter extraordinaire services, so Brian and I went out to dinner! Alone! For possibly the last time, ever... because who's going to be crazy enough to watch FIVE kids for us!?

Today has been very busy, too -- more about what we've been up to later. I'm tired!

Whooo?

2011-10-20T19:40:00.001-05:00

This hat is just too cute for words!

Thanks to my friend, Sarah, for making this for Baby Zoromski!

Check out Sarah's blog -- she makes & sells all sorts of things, and then donates the proceeds to orphans.

Ponderings

2011-10-19T11:22:00.003-05:00

I love my girls with Down syndrome -- I think that's pretty clear by now.
I've never been in the camp of parents who wish away that extra chromosome -- it's not going to happen, I know that. I know the girls have extra challenges, and I'm so proud of every accomplishment they make!
However, I wouldn't be opposed to enhancing their lives, and making learning a little easier for them, if that were an option. Or, "Enhancing brain functions such as cognition and language in individuals with Down syndrome holds the promise to help these individuals conduct a more independent life." as the article below states.
Roche Starts Early Stage Clinical Trial in Down Syndrome

Interesting.
And, it's exciting to see new research about Down syndrome that isn't focused solely on pre-natal diagnosis and termination. I think the world is definitely a better place, with individuals with Down syndrome in it. I know my life is better, for it -- and I hope my girls have every opportunity to lead a happy, productive, healthy life.

Local People: A Comedy Event!

2011-10-19T09:23:00.002-05:00

Comedy Event Benefiting

Down Syndrome Association of WI -

Fox Cities

Thursday, October 27th
Seating Begins at 6:30 pm

Comedy Quarter

1575 Plaza Drive, Neenah

Click HERE for directions

Enjoy a night out and support Down syndrome awareness!

This event is not only for DSAW-Fox Cities families.

Tell your relatives, friends and neighbors who may be looking for a way to support Down syndrome for Down syndrome awareness month or may just be in need of a fun night out! Feel free to forward this email on to others!

Tickets should be purchased in advance online by clicking on the link below or simply visiting www.comedyquarter.com. Show features Spanky Brown and is rated PG-18. Visit website for additional details.

Buy Tickets Now!

100% of the proceeds from ticket sales benefit DSAW-Fox Cities!

Horse Therapy

2011-10-18T08:58:00.004-05:00

I know I've blogged about the girls going to see the horses last summer, but thought I'd bring it up again for DS Awareness month. When you have kiddos with special needs, sometimes therapy comes in all sorts of fun forms!

We started equine therapy for the girls this past summer. They were riding at the same time, with the help of volunteers (i.e. they were safe, I got to sit on the sidelines and watch & cheer).

Lil was pretty nervous the first few times (she was glued to her helper the first time she was on the horse) but she eventually warmed up.

Then, her horse started coughing. That freaked her out, and her next couple sessions were pretty rough. We took a hiatus when we were on vacation and school was starting ... and we're back at it.

Now, the girls ride one after another for the most part (because they don't have as many volunteers as they did in the summer, for one thing). We've found it is immensely helpful for Lilya to watch Ruby ride for a little bit. That helps her calm down, and look forward to her turn.

Last week, we showed up and Lilya asked for her "hat" right away. She was ready!

They also wear safety belts, to make it safer to hold onto them.

Rubes has no fear! She's always ready to walk on" as they tell the horses.

Last week, Rar-Rar came with to watch! He was very well behaved.

Near the end of Ruby's turn, Lil was just starting out ... they were playing a little game of catch together

Ruby & Rar-Rar, watching Lilya ride

Lil did great! No fear at all -- and she didn't try to quit early (by saying/signing "All done!")

This is not only great fun for the girls, but it's very good for building core strength (which Lil especially needs). They are TIRED after they ride -- it's definitely a workout!

Weekend Recap

2011-10-16T22:39:00.002-05:00

I never really blogged about it, but Brian was gone all last week. Much like I don't like to blog about when we're going on vacation until we get back, I just didn't want to announce to the world at large that the kids & I were home alone.
Anyway, Brian was gone for work all week. It was a long week for all of us, but we survived! As the week went on, the little girls were clearly missing Brian more, and it was hard for them to understand. Brian had a wonderful reception when he returned on Friday -- he had two little barnacles clinging to him for the rest of the evening.

Braden's popcorn sale officially ended today -- he tripled his goal! He'll find out in a couple weeks if he's a top seller in his unit (the number one prize is 3 sets of Star Wars Legos, so he was very motivated).

Karly has a consult with the dental surgeon this week. She'll have to have her wisdom teeth out -- she only has three, which is better than needing to have four removed!

And... that's about all I have for tonight!

Ruby's Family

2011-10-15T20:40:00.002-05:00

Ruby brought home this picture of her family, from school...

All the 4K kids made them, I got to see them hanging on the wall when I went to Ruby's class last month.

Ruby was showing it to Daddy, but it was hard for her to hold it -- I think it's almost as tall as she is!

Our Family!
Braden, Lilya, Karly, Ruby, Lilo the cat, baby boy, Dad & Mom

Good work, Ruby!

Wanted: Learn Through Music

2011-10-14T13:15:00.001-05:00

This is Lil's absolute favorite, favorite toy.

We have several of the cartridges for it, and two of the Learn Through Music machines to play them.

Unfortunately, they are BOTH broken. And, of course, no longer made or available in stores.

If you have one to get rid of -- please contact me!
I'll pay for shipping, and be eternally grateful.

Party Etiquette

2011-10-14T10:11:00.002-05:00

I'm not a big birthday party person. Like I said recently, Braden just had his first "with friends" party -- and he's 8. I think Karly was around the same age when we had her first school friends party.

So, this past week, Lilya has been invited to 2 birthday parties, and Ruby to a Halloween party. Which to me, is really exciting for them!

I'm sure it's an "invite the whole class" thing, though ... and I worry. Do the parents know the girls have Down syndrome? Will they think I'm odd, if I stay? Probably not -- I mean, these are pre-kindergartners and kindergartners. It's not like it's a junior high party.

And, if they don't already know the girls have DS, will they regret inviting them once they find out?
I think we can actually only make it to one of these 3 parties this month, because we have other things going on ... but still. I am so excited for them to be included, yet so nervous for how it's going to play out.

My plan is to make sure the parents know when I RSVP, like, "I'm not sure if you've met Lilya yet, but she does have Down syndrome. Because she does have some communication struggles, I planned on staying with her for the party -- is that okay with you?" Something like that.

Is that the best plan? I don't know. I'd rather give them some time to process that she has Down syndrome, maybe ask their child about her, than just show up at their door and have them too polite to ask me anything. I don't mind that the topic is out there (and a note about a "friend in class has Down syndrome" did go home to Lilya's classmates). We are not ashamed or embarrassed that the girls have Down syndrome, and we're certainly not afraid to talk about it ..... and yet. They're so much MORE than just little girls with Down syndrome. I don't want people to have preconceived notions, either.
Parenting is hard.

Advice? Suggestions?

Ruby's Number One Fan!

2011-10-13T22:00:00.002-05:00

Both girls actually love to watch themselves in the mirror...

Lilya's Cardiology Update

2011-10-12T17:04:00.000-05:00

When we committed to Lilya, way back in fall 2009, we knew she had a heart defect. You can read her full bio here, but the heart defect was listed as an AV canal defect, well-balanced. We had questions -- lots of them! and found a pediatric cardiologist who would answer our questions via email. We were warned -- there was a chance she was unoperable. For her to have a heart defect for 5 years, left untreated, could have potentially damaged her lungs.

Heart issues were new for us, but we really felt like this was our daughter and we should do our best to bring her home and get her that surgery, if it was possible. Now, I admit, I was not looking forward to getting home with a new child and then going through a major surgery for her (scary for her, more time away from the other kids for us), but we were committed to going forward.

And besides, I followed along when Emma Cornish came home in 2008, was said to be inoperable ... and then another doctor successfully repaired her heart.

Then, shortly after we committed to Lilya -- we got an update. She had her heart surgery! Our poor dolly went through major surgery, alone, without a mom or dad to comfort her -- but she now had a stronger heart.

Today was our third visit to the cardiologist, and I like her very much (she's the same one who answered my emails back in 2009).

Our first visit was in August 2010:

Cardiologist - we knew Lil had an ASD (hole) that was repaired. She apparently also had a VSD (hole in a different place) that healed on its own, probably when she was a baby. We didn't know she had a valve repaired (stitched) during her surgery, and this mitral valve has a bit of back flow.

What does that mean? For now, she looks good. She had an EKG & an Echo (she's such a trooper & good listener!) The cardiologist started her on a low dose blood pressure med, to help the blood flow easier, with the goal of preserving the life of that valve. Otherwise, in the future (5, 10, 20 years) she may need another operation to repair or replace that valve.

We then put Lil on the blood pressure medication, and went back after 6 months, and continued our same course.

Today, there was a mixup in the doctor's office, and they forgot about us. So, we waited and waited and waited some more, and then finally -- Lilya had an EKG & an Echo.

When we saw the cardiologist, she completely blew me away. She said the back flow of the mitral valve is virtually non-existent. She can't even hear a murmur when she listens to her. She thinks with Lil's growth, time since surgery, better nutrition and overall health -- we should take her off the medication. She wants to give her a chance to prove that her heart is doing what it's doing, on its own.

AMAZING!

We'll follow up in a year (or earlier if any problems should appear) ... but, our girl has a wonderfully healthy heart!

A Girl and Her Dog

2011-10-11T20:06:00.001-05:00

Ruby loves dogs lately. From cartoon dogs (Clifford the Big Red Dog and Martha Speaks are big favorites) to live dogs, they always bring a smile to her face. In the last few weeks, she's taken to one of her stuffed animal dogs... who she calls "Rar-Rar".

Ruby does everything with Rar-Rar...

They watch TV together,

Play in the office,

Go upstairs and downstairs,

And go for walks outside.

Rar-Rar even watches Ruby swing.

Michelle and I aren't big dog people, but we love Rar-Rar. He eats almost nothing, never makes a mess and doesn't complain when he doesn't get to go outside. He can get pretty yappy at times, but never in the middle of the night. He's really the perfect pet.

Raking in Shorts

2011-10-10T19:23:00.000-05:00

You can definitely tell it's fall in Wisconsin... kids are in school, football season is in full swing, Cub Scouts like Braden are out selling popcorn, leaves are falling and it's 80 degrees outside. Wait -- what? It's 80 degrees out? Yes, this weekend it was shorts weather... and the trees here are just as confused as us.

While some trees have decided it's definitely fall (we did get a frost one day, over a week ago), changed colors and are almost completely done dropping their leaves. Others have taken a look around and said, "Seriously, guys? It's 80 degrees out. I'm not changing colors yet."
About the half the trees in our yard fell into the "It's fall now!" group, so Lily and Ruby helped me rake up some leaves this weekend. While wearing shorts and t-shirts. It's the first time I can ever remember not only raking in shorts but actually thinking, "Man, it's hot out," while raking leaves.

Since this picture was taken (on Saturday), the tree on the left now has almost no leaves left. The tree on the right still hasn't changed colors. The little girl? Still adorable, even without a rake.

The rake may be upside down, but it doesn't stop her enthusiasm.

This is a much more Ruby-sized rake, but soon after this she gave up on raking and moved on to the fun part...

... jumping in leaf piles!

Lilya joined in as well, a little hesitantly at first.

Ruby gets ready to take a running jump into the leaves while Lilya checks out a rake.

Ruby's signing "again" in this picture.

They played in these leaf piles for hours and hours on Saturday and Sunday. They were both exhausted... Ruby and Lily even slept in until 8:00 this morning, which is unheard of -- normally they wake up sometime after 6:00, almost never later than 7:00.

80-degree weather in October? The girls sleeping in until 8:00? What's next? (Did I just jinx it by asking that?)

Bat-bat-bat!

2011-10-09T22:09:00.000-05:00

There are so many things in this video that crack me up.

Brian calling Ruby, "Lil-Ru" ... which we do, often. It's a danger of having multiple children -- you mix their names up.

We brought this Halloween party flyer home from the walk last weekend, and Ruby was so amused with the pictures of the bats -- she made up her own little bat move.

But my absolutely favorite is Ruby yelling, "ALL DONE!" when she's done performing.

The actual sign for bat is different, but try telling Ruby that!

Braden's Party!

2011-10-08T15:32:00.001-05:00

Last month, we had a birthday party at the local inflatable play place for Braden!

This was Braden's first birthday party with school friends!
And of course, there was a Star Wars cake involved

Braden and a new friend ;)

Brian and I decided to find a sitter for the girls during the party. Watching Lil and Ru at a place like this is a full-time job -- they're active and small, so we really have to keep an eye on them. We weren't comfortable watching our kids AND 7 children that didn't belong to us ... so the decision was made. And? It really worked out for the best!

Because those second graders were BUSY!

And we all had a lot of fun!

Sandal Gap

2011-10-07T13:24:00.000-05:00

One of my favorite features that some people with Down syndrome have is the Sandal gap -- and Ruby definitely has one! It's quite pronounced when she's standing barefoot.

In case the picture isn't enough explanation ... the sandal gap is that extra space between the big toe and the second toe. That's it. It doesn't hurt her or do anything or mean anything ... it's just a bigger space.

Sandal gap is a soft marker -- means it's often found in people with Down syndrome, but not exclusively.

(And seriously? Have you ever seen cuter little toes!?)

The Second Annual DSAW-Fox Cities Walk

2011-10-06T21:46:00.002-05:00

This past Saturday was our local group's second annual Down Syndrome Awareness Walk. My ever-busy and ultra-dedicated wife was not only on the planning committee for the walk, but she also headed up a table for Reece's Rainbow there, giving out information on the wonderful organization that helped us adopt Lilya.

Both Lilya and Ruby had a blast. A couple inflatables were set up -- an obstacle course and a giant slide -- and they loved the inflatable slide! I went up and down with them at least five times...and the only way we got them to stop was by promising we were going to eat lunch.

While the girls loved the slide, they hated having to wait in line for it. They mainly just kept trying to sneak past the other kids in line, but a couple times Lily was distracted by a kid of another sort... The slide was set up next to a little petting zoo, and there was a little goat. Lily is generally afraid of animals -- she really doesn't like being around big dogs -- but she was not only fine with this goat, she was following it around for a while.

On our way to lunch we got to hang out with Hopkins the frog and Rachel from Signing Time -- the video series that teaches kids sign language with lots of music. Ruby was a big fan of Hopkins and Lilya loved seeing Rachel -- Lil watches (or at the very least, asks to watch) Signing Time every day.

Ruby signing "frog" at Hopkins

Ruby figured out there was a person inside the Hopkins costume and was having fun peeking in

After the slides, the goat, hanging out with Hopkins and Rachel, eating lunch and attending the pre-walk rally, Lily and Ruby were pretty exhausted. Although that probably had a lot to do with the slide -- they really got a workout getting up there.

The walk itself was a huge success -- over 1200 people attended, 200 more than than last year. Here's a pic soon after the walk started:

The girls were sleepy, but they enjoyed playing with these cool balloon corsages our friends Laura and Alaina let them play with. Both girls liked pretending to sniff the flowers, and encouraging others to do the same.

After the walk we met up with Ruby's old Birth to 3 team, who had participated in the walk as a team. They had a couple dogs with, and Ruby had to check them out. She's a huge fan of dogs... Lilya still remains nervous around them (likely because she never really saw one until arriving in the States last year).

We are so thankful to have our wonderful local Down syndrome group -- and we can't wait until the 3rd annual walk next year!

Ruby's Artwork

2011-10-05T22:53:00.003-05:00

We were so excited when Ruby brought home a drawing the other day, and we could tell what it was before we read her teacher's note!

They were talking about ways to stay healthy ...

and this is Ruby, swimming!

And she does have help when writing her name :)

Ripple Effect

2011-10-04T11:15:00.000-05:00

I'll never forget, when I was in Ukraine, in the midst of Lil's adoption, and I received an email from my friend, Jill. The subject line read "Ripple Effect."
In this email, Jill shared with me that she & her husband (and their 5 children at home) were going to follow our lead and adopt a little boy with Down syndrome from Ukraine. That little boy is now Elijah, and has been home for almost a year ... and that little boy has a new, little brother with Down syndrome who came home this past July.
Jill wrote about it a little on her blog today, and I'm honored that Ruby and Lydia and Lilya had a small role in bringing these two beautiful boys home to this amazing family!

And, possibly the craziest part of all ... Jill let me watch 3 of her children when they traveled to Ukraine this past summer, including her newly adopted Elijah!

Ruby & Elijah

The Ukrainians!
Elijah & Lilya

Isn't he the cutest little bug!?

Our Daughters with Down Syndrome

2011-10-03T13:49:00.000-05:00

I have a different version of this post from 2009, talking about our two daughters with Down syndrome. My, how things have changed since then! Most of you will already know all this, but in case someone is new here because of 31 for 21, I thought I'd recap our story.
We do, in fact, have three daughters with Down syndrome.
Our identical twin girls were born in May 2007. We didn't know ahead of time that they had Down syndrome, but we had a little warning -- Lydia had a soft marker, but on its own, that really didn't mean much to us. We wanted these babies, no matter how many chromosomes they had.
We found out at a routine ultrasound, 37 weeks and 5 days into the pregnancy, that Lydia was gone.
I've said this time and time again -- losing Lydia gave everyone so much perspective. No one cared that Ruby had Down syndrome, we were just so grateful to have her with us.
That was Lydia's gift to Ruby. Perspective.

And, beyond that, without losing Lydia, I don't know that we would've been drawn to adopt another little girl with Down syndrome. But, I felt very strongly that Ruby was supposed to have a sister, like her, to grow up with.
At first, we started talking about "maybe adopting a baby, someday..." but then we learned more and more about how children were often sent to institutions in some countries, between the ages of 4 and 6. Simply for having Down syndrome, these children would never go to school, never find a family in their own country.
We were led to Reece's Rainbow by pictures people were posting on their blogs ... we actually inquired about a different little girl before we found Lilya. But the other little girl was soon matched with a family, and we kept reading different profiles -- and there she was. A twin, given up at birth for having DS, while her healthy twin was taken home.
A little girl, 5 years old, heading soon to an institution. A twin without a family ... and we were a family missing a twin.
Now, Lilya's been home with us for over a year. She's 7 years old, and thriving. She's healthy, growing, and loves to go to school. She loves music and dancing and swimming (that's new!) and tickling her big brother. She and Ruby play and fight -- just like I always imagined sisters should!

People First Language

2011-10-02T11:44:00.002-05:00

People sometimes get up-in-arms about People First Language. "Oh, the world has become too politically correct, everyone is overly sensitive.."
But it's not about being PC. It's about RESPECT.
People with disabilities are often denied that basic respect, because they aren't always able to speak up for themselves. Also, their disabilities are often very visible; Ruby & Lil wear their Down syndrome on their faces -- many people will judge them before them ever meet them, based solely on their appearances.
And, so, it's simply respectful to remember -- people are PEOPLE, first. They are NOT defined by their differences or disabilities or disease.

Just as I wouldn't say, "This is my cancer daughter," when introducing Karly, I don't say, "This is my Down syndrome daughter," or "She is Downs," when introducing Ruby or Lil.

I might say, "This is my daughter, who has Down syndrome" -- simple change, right? Person, then disability.

Another way to look at it is that Ruby & Lil have Down syndrome -- Down syndrome doesn't "have" or define them.

You can read more about People First Language online!

31 for 21 - Day One!

2011-10-01T18:09:00.002-05:00

Grab This Button

We had an amazing day at our local Down Syndrome Awareness Walk -- and we're all exhausted!

What a great way to kick off Down Syndrome month, though! I'll share more about the walk with you -- since the goal is to post every day for October, I'm sure I'll need lots of topics. So, if you have any questions about Down syndrome or our girls or our lives in general -- now is the time to ask!

After a day like today, though -- I just want to say, I'm so grateful for what Down syndrome has given us. So many wonderful friends and experiences, in the past 4 years. I'm excited to see what the future will hold!

To sign up for 31 for 21, you can click on the button above, or go directly to Tricia's blog, Unringing the Bell to sign up. Go see Tricia, she's awesome!

Ramblings on Down Syndrome

2011-09-29T14:03:00.000-05:00

I often feel like people don't REALLY believe me when I tell them how wonderful Ruby & Lilya are. Like when Ruby was a baby, and I'd tell someone that she had Down syndrome, they'd give me that look, full of pity. I'd say, "No, really, she's AWESOME!" and they'd smile, like 'Sure, you HAVE to say that... '

I think bringing home Lilya does in its own way show that we love these girls, and we're not fearful or devastated by that extra chromosome. We didn't adopt her to prove a point, but I think by choosing her to join our family, it makes a point on its own.

This is all swimming in my head lately not only because October is Down syndrome awareness month, but because there's an advanced test that will likely be available soon, for pregnant women. It will be more accurate ... and since the termination rate of babies with Down syndrome already hovers around 90% ... well, it could be a matter of time until it's rarer than it's ever been.

I'm glad people are speaking up -- like this article: Down syndrome's rewards touted as new test looms

If you don't know who Brian Skotko is, he's a doctor at Children's in Boston, and grew up with a sister who has Down syndrome. He's well-renowned for his expertise -- and I for one appreciate that he takes the time to make his voice heard with the media, when the rest of the medical profession often leans the other way.

And, I'm so grateful there's a huge community of people -- parents, siblings, people with Down syndrome -- who are blogging and connecting and sharing their stories. All these people, sharing their daily lives -- that's the real education prospective parents should have access to.

Because, the bottom line is, if it hadn't been ME, I don't know that I'd fully get it. If I had a cousin or friend who had a child with Down syndrome, I don't know that I ever would've fully understood this simple truth -- I love these girls. They are my daughters, and I love them. I love Ruby and Lilya JUST AS MUCH as their siblings. I don't love them "despite" their Down syndrome -- most days, I rarely even see it. And when I do see it, it's usually because they are doing something that amazes me, with their perseverance and determination, even when things are challenging.

What I see -- and what I hope the world will see -- is that they are wonderful, beautiful, delightful, mischievous little girls, and I'm a better person for being their mother.

Popcorn

2011-09-29T07:37:00.000-05:00

Braden is now in his second year as a Cub Scout and the annual Boy Scout Popcorn Sale started this past weekend! Braden's very excited this year about selling -- we spent almost all day Saturday walking around our neighborhood, and he wants to go out every evening after school. His goal is to hit $600 in sales this year, where he gets a cool "$600 Club" badge for his uniform and a fancy-looking Nerf gun. (Well, he also wants to win first prize in his Cub Scout Pack, but the kid who won last year sold over $2,000 so his $600 goal seems a little more reasonable. The first place prize is a collection of Star Wars LEGO sets Braden doesn't have, so you can understand why he's a little obsessed with first place.)

Starting last year, the Boy Scouts popcorn products are changed from previous years -- all microwave products are made with canola oil and all caramel products are naturally sweetened. This year, they also added White Chocolatey Pretzels and microwave Kettle Corn.

Over 70% of the proceeds from the popcorn sales go directly to Braden's local Boy Scouts pack.

Let us know if you want to order anything -- here's a rundown of what's available:

Caramel Corn: $10

Popping Corn: $10

Unbelievable Butter Microwave Popcorn: $18

Butter Light Microwave Popcorn: $18

Kettle Corn Microwave Popcorn: $20

Butter Toffee Caramel Corn: $20

Chocolatey Triple Delight Popcorn: $25

Caramel Corn with Almonds, Cashews and Pecans: $25

White Chocolatey Pretzels: $25

Cheese Lover's Collection (3 bags: Cheddar Cheese & White Cheddar Cheese Corn): $30

Sweet & Savory Collection (3 bags: Chocolatey Triple Delight, Butter Toffee Caramel Corn, Cheddar Cheese Corn): $40

There's also a bunch of bundles that you could order online and have them shipped right to you -- if you click this link, Braden will get credit for your order.

Support the Z Crew!

2011-09-26T08:44:00.003-05:00

Please consider making a donation to our team! The funds we raise at our local walk STAY LOCAL, and support individuals with Down syndrome and their families in a three-county area.

Donations can be made online and don't forget, you can Join our team!

Down Syndrome Association of Wisconsin-Fox Cities (DSAW-Fox Cities) became a new chapter of DSAW in February 2010. DSAW-Fox Cities has many ways in which it reaches out into the community to promote Down syndrome awareness. It is a nonprofit parent run organization that relies on volunteers and donations. The money raised from the walks is used for many beneficial programs, educational resources and scholarships. The following is some of the ways in which DSAW-Fox Cities is working hard to bring both awareness to the community and improve the lives of those with Down syndrome and there loved ones. Your support is instrumental in providing these services. Please visit dsaw-foxcities.org for further information but the following are some of the things that you have helped make possible.

Between January-September 2011, DSAW-Fox Cities accomplished the following:

Served 85+ member families via private Google group
Reached 150+ individuals or organizations via the monthly email newsletter, website and blog
Held 30+ social events or educational workshops
Distributed 35+ Down syndrome information packets for new & expectant families to hospitals, OB & pediatric clinics, genetic counselors, and Birth to 3 programs
Created 5 new scholarship or grant opportunities for individuals with Down syndrome
Funded participation of individuals with Down syndrome in local sports opportunities and the Lose the Training Wheels camp in Milwaukee
Funded participation of parents in two national Down syndrome conferences
Provided $100 gas/grocery gift cards to families experiencing major hospitalization of a child with Down syndrome
Frequently submitted New Materials Suggestions to local public libraries to update resources
Donated 180 books to be included in the Down syndrome information packets
Donated 7 Signing Time school sets to local school districts
Participated in Building for Kids' Children's Parade in downtown Appleton
Funded the Spread the Word to End the Word Campaign in local schools

Lil & Ru thank you for your support!

Please Join Our Team

2011-09-26T07:52:00.003-05:00

PRE-REGISTRATION CLOSES ON WEDNESDAY!

You can still register at the walk, but will not be guaranteed a t-shirt.

The 2nd Annual Down Syndrome Awareness Walk will be held in Neenah on Saturday, Oct 1st!

You can register online -- registration is $5 per person and you get a t-shirt. New this year -- you can prepay for lunch online, too ($2.00 per person). I hope you'll join us!!

GO HERE TO REGISTER AS PART OF OUR TEAM!! :)

For more about the walk and the events that day, read HERE - Rachel Coleman of Signing Time will be returning, we'll have a lot of other entertainment (bouncy houses, clowns, petting zoo, craft table & more!)

If you'd like to donate to our team, you can do so here: DONATIONS (or through the Firstgiving button in the upper left corner).

All funds raised stay in our local community.

I hope you'll join us! We had such a wonderful (if cold) day last year, celebrating those in our community with that little something extra :)

Ohhh, Ruby

2011-09-24T21:10:00.000-05:00

Today, Ruby was upstairs, playing in what will be the baby's room. The room where we have all sort of stuff stored for now ... including 2 huge totes of baby clothes from my awesome friend, Sara :)

Ruby loves to play with the baby toys we have stored in there. She was up there playing happily today, for quite some time.

When Ruby came downstairs ... she walked into a wall and fell over. It was then I discovered she was wearing a tiny pair of baby pants on her head! Oh my gosh -- so glad she was okay ... although she was pretty mad about walking into the wall. It could've been much worse!

So, when we discovered the state the room was in ... all I could do was laugh.

You could barely open the door ...

there were so many clothes on the floor!

and BOTH totes were completely empty.

Oh well -- sorting tiny baby clothes will give me something to do when I'm nesting this winter!

Girlies

2011-09-23T08:08:00.000-05:00

Ruby's new 'do is short & sassy ... just like she is!

Lil, reminding me we have cake in the house (these pics were shortly after Braden's birthday)

Lil, showing off a dance move

Good grief, how do we ever get anything done with all the cuteness around here?!

Risks

2011-09-19T14:41:00.002-05:00

I've been asked a few times these past couple months if we were doing any prenatal testing. The short answer is no -- but we're watching for signs along the way.

Am I high risk? Sure -- I've had two babies with Down syndrome and am older than I was then. I was 32 when the twins were born, and I'm 37 now. Both my age and history puts me more at risk for having another child with Down syndrome.

My doctor asked if I wanted the triple screen bloodtest done a couple months ago (which tests for likelihood of Down syndrome, among other birth defects), and I declined. I told him, "Last time I had that test and it said everything was fine, and I had TWO babies with Down syndrome," and he said fair enough, and we moved on.

However, when I have ultrasounds, we'll watch for warning signs, and if we see anything suspicious, there is more testing I can do (more advanced ultrasound, or an amniocentesis).

We aren't concerned. If this baby has Down syndrome, then he does. I'm not worried. In fact, sometimes I worry the other way -- will I remember what to do with a baby or toddler who DOESN'T have Down syndrome?!

Packer Tickets

2011-09-15T08:04:00.000-05:00

Hey local people!

Our local Down syndrome group is raffling off 2 Packer tickets again!

Suite Seating for 2
Packers vs Raiders
Dec 11 at noon

Tickets are $5 each

Let me know if you'd like to buy one (or more)! The raffle will be held on Oct 1, at our Down Syndrome Awareness Walk (which will be lots of fun, so let me know if you want to join us!!)

8 is Great!

2011-09-13T10:18:00.001-05:00

For the past month, we've had two 7-year-olds in our home, since Braden & Lil are exactly 11 months apart.

Yesterday, that ended, with our Brades turning 8! He'd been counting down the day -- and the first thing he asked me that morning was, "Did you take my booster seat out of the van already?" (Wisconsin car seat laws are children must be in a booster until age 8 or 80 pounds).

Sweet picture of Braden while we sang to him

I love that Braden is happy with my homemade Lego cakes! Mini-muffins for the Lego bumps on top ... and this year? Orange frosting, by request!

Braden got to pick where we went for dinner last night (Culvers was the last minute winner -- can't deny this boy loves cheese curds), and then he got to open his gifts, with much cheering from his sisters!

Happy Birthday, Braden!

Ruby got her haircut!

2011-09-11T20:35:00.002-05:00

Her hair was always in her mouth or sticking to her face, and she won't keep pony tails in for long ... so, she got a cute new 'do today!

Short & Sassy -- just like Ru!

Lil looks afraid of Ruby's forthcoming hug, doesn't she?

The girls!
(Lil had to kneel because Karly was kneeling)

Braden's Geography Worksheet

2011-09-09T16:39:00.000-05:00

Braden brought home a worksheet today with 4 geography questions, that he had completed at school

1. Name 2 states that border Wisconsin? Michigan, Minnesota

2. What is the smallest state in the US? Rhode Island

3. What city/village do you live in? (he wrote in the name of our little village)

4. Name a country that is in Europe: Ukraine

I wonder how many other second graders answered Ukraine?? :)

Oh, YEAH!

2011-09-08T20:39:00.000-05:00

Brian laughed at me tonight. He said, "Really? You don't know why Ruby is saying, 'Have a good day?'" (from my previous post)

And I said, "I figured it out this afternoon, when I put Ruby on the bus and told her, 'Have a good day!'"

I say it every day, to every kid, as they head out the door (or get on the bus) for school. Heck, I even say it to Brian every morning when he leaves for work!

What can I say, I'm not very self-aware...

Wordy II

2011-09-08T12:01:00.000-05:00

Lilya had her yearly pediatrician appt today, so I dropped Ruby off at my friend's house.

When I picked Ruby up, she said, "Bye! Have a good day!" as clear as could be. That was a new one to me ... I've heard her say, "Hi, how are you?" but I wonder if her teachers say "Have a good day" at school? TOO CUTE!

And, Ru chattered away the entire time she played at their house. I love to see speech developing, for both girls!

And, Lil's checkup went well -- until she had to get a blood draw and 2 pokes, so she was pretty angry when we left. She's a healthy, growing girl though -- up to 37 pounds and 40 inches tall! A year ago, she was 31.5 pounds and 37.5 inches.

Wordy

2011-09-08T08:04:00.001-05:00

I took the girls to speech all summer, working mostly on putting words together.

Ruby is a chatterbox, and about half of it is intelligible. Lil is a one word at a time girl ... we think it's still the language transition (Ukrainian to English).

Signing helps Lilya SO much -- even though she can say most of the words she can sign, it helps reinforce what she is saying if we don't understand. Also, I think being able to connect a movement to a spoken word helps her comprehension.

But! Lil just signed and said to me, "Cereal. I. Want. More. Please." without any prompting from me -- she put all FIVE words together in one string.

One slow, contemplative sentence ... but all on her own!! Yay, Lil!

How many days of school...

2011-09-07T17:02:00.000-05:00

until we get a phone call from school?

This year, the answer is THREE. Three days.

We have 4 kids at 3 different schools ... so which someone were they calling about?

Little Miss Ru!

It wasn't the "Ruby ran off ..." call I was expecting, though. It was "Ruby bumped her head on the swingset." Poor dolly had a bruise on her forehead, but she's fine.

Picture of TINY Ruby on her first day of school, lining up with her classmates. She's so little!

I love putting Ruby on the bus for school, she's SO excited -- she grins and waves frantically to me & Lil. I think she's really happy that it's finally her turn to ride the big yellow bus, just like Lilya did last year.

Don't worry about Lil, though ... her bus comes along about 6 minutes later :)

Silly Lily Update

2011-09-06T13:35:00.000-05:00

It's hard to read her shirt, but it says, I'm the Pot of Gold at the end of Reece's Rainbow!"

She sure is a pot of gold -- and we are LUCKY to have her!!

Lil turned 7 in August, and started kindergarten last week. She's in the afternoon class, and loves riding the bus to & from school. She's in our neighborhood school this year, so she's in the same building as Braden.

The past couple weeks, Lil had been grinding her teeth again -- which she usually only does when she's not feeling well or is over-tired. It turned out she had a loose front tooth! On the first day of school, we had corn on the cob with dinner -- and Lil is now missing her top front tooth! Unfortunately, I think she ate the tooth with the corn...

Last night, we took the kids out for dinner. The restaurant has kids meals with free ice cream sundaes for dessert, and Lil had her first run-in with brain freeze. She took a big spoonful of ice cream and made a funny face. She did it again, and started to cry. I snuggled her for a bit -- but I also had to laugh a little, and tell her she is SO much like Mama.

Lilya still loves music and dancing - she'll dance in front of her reflection for a long time, just watching how her body moves. She's very kinesthetic -- she loves swinging and jumping and dancing and swimming -- definitely the makings of an athlete!

Lil still uses a lot of signs, but her speech is picking up, too. She says AND signs many things together now. She's still quite the mimic -- if you scratch your nose, she'll scratch her nose and look at you like, "What's that the sign for?"

She's still not a big fan of imaginary play. She'd prefer to sit and look at the Signing Time flash cards or her ABC book, instead of playing doll house or with stuffed animals.

Her very favorite song is the alphabet -- she tries to sing and sign along while you sing it (and she does very well!) She can name all the letters, but not necessarily say them in order. She also knows the sound each letter makes, and she can usually count to 10.

Anyway ... that's where we are, just over a year home.

California Trip, Day 6: La Brea

2011-09-03T16:40:00.001-05:00

We could NOT hang out all day in the hotel without the kids climbing the walls, so we loaded up to go driving around. It was Los Angeles! We could at least drive around Hollywood for a while, right?

Well, as we were heading to Hollywood, we crossed over La Brea Ave and Brian said, "Hey! Tar pits!" the same time I said, "La Brea!" so ... we changed course and headed to see ... tar, in it's natural habitat! :)

The first thing we learned that we didn't know is that the tar bubbles, but it's not hot. Huh. I always thought it was bubbling because it was hot ... but, nope -- it's the gasses that make it bubble.

Also, there were no dinosaurs in the tar pits -- they formed AFTER the time of dinosaurs. Who knew?

The tar pits had animal statues ... to help visualize how animals got stuck in them, I guess.

I told Braden to stand by these little trees and he'd look like a giant!
That didn't really happen ... but they do look like something out of a Star Wars movie.

It was hot and we had no other plans ... so we headed into the Page Museum (which is right there at the tar pits). Many of the fossils they find in the tar are stored right on site at the museum.

Oh no! A mammoth is going to crush my children!

Actually, many of these large animals were animatronic ... and Lilya wanted absolutely NOTHING to do with them.

Here I am, posing with Dire Wolf skeletons ... if you have to ask, well, you've probably never read the "Game of Thrones" series (which Brian & I are both reading).

We had no idea Dire Wolves used to be real!

Back outside with the stinky tar made Lil much happier!

Then, as we were leaving there was a hot dog truck, so we had an impromptu picnic for our lunch.

First Day of School

2011-09-02T13:21:00.001-05:00

The sign of the day: school!

Yesterday, Ruby started 4K
Braden started 2nd grade
& Lilya started 5K

Unfortunately, Karly leaves for high school so early in the morning, we didn't get a picture with her and the other kids :( Karly is now a SOPHOMORE! Which seems impossible, since I swear I was just in high school yesterday.

Later, after lunch, it was FINALLY time for the girls to go to school!

They were SO excited!!

Dancing in the kitchen with backpacks!

1st Day of School Tradition

2011-09-02T08:55:00.001-05:00

I know I blogged this every year, but it's a tradition since I was a kid ... on the first day of school, I make M&M cookies for the kids! My mom used to make them for us - she'd even mail them to Mike & I when we were in college.

Ru looks exhausted, because she is! She slept on the bus on the way home.

Lil kept signing "juice" ... so picture taking wasn't going well :)
She looks pretty tired, too!

Our 2nd grader -- when did he get so big?!

This picture made me laugh -- they're both inspecting the M&Ms on their cookies.

I used the M&Ms we had left from Uncle Mike's wedding -- they have tiny pictures of Uncle Mike and Aunt Cathy on them! Well, the pictures didn't do so well in the oven, so they were hard to identify.

Karly finally sat down, too --

All 4 kids, eating their M&M cookies!

California Trip: Post-wedding Party

2011-08-30T15:03:00.001-05:00

After the wedding, we brought the girls inside. It was so hot out, and Lil was stressed out ... we were worried for a time we'd have to bail before dinner. But the cool, quiet indoors calmed the girls down ... and then there was music! and food! And everyone was happy again.

One of the groomsmen came up to me and said, "Did you know your son is the center of a dance circle?" Ummm... Nope! No idea! Apparently, when the DJ said, "Everyone form a circle around that guy..." he was referring to my 7-year-old son.

This is not from that dance circle -- because I missed that -- but this was later on, Brian caught some of Braden's moves:

Reposting: Please Join Our Team!

2011-08-28T22:23:00.000-05:00

The 2nd Annual Down Syndrome Awareness Walk will be held in Neenah on Saturday, Oct 1st!

You can register online -- registration is $5 per person and you get a t-shirt. New this year -- you can prepay for lunch online, too ($2.00 per person). I hope you'll join us!!

GO HERE TO REGISTER AS PART OF OUR TEAM!! :)

If you'd like to donate to our team, you can do so here: DONATIONS (or through the Firstgiving button in the upper left corner).

All funds raised stay in our local community.

I hope you'll join us! We had such a wonderful (if cold) day last year, celebrating those in our community with that little something extra :)

A couple of my favorite pictures from last year's walk ...

Brades on stage, signing "Silly"

My friends! See you soon!

Lil's sign along the walk

Dad and his crew of little peeps

Lilya, Rachel, and Ruby!

California Trip, Day 5: The Wedding!

2011-08-25T11:20:00.001-05:00

So the real purpose for our trip to California was to attend Uncle Mike's wedding! My baby brother got married -- and now we have Aunt Cathy in our family, as well.

Nana & Karly, getting ready at the hotel

Boppa Bob, helping Lil fix her ribbon ... Ruby resting on Daddy's lap (big yawn!)

Daddy and his little girls

We were hanging out in the shade ... waiting for the wedding to begin, and my mom says, "Hey, Michelle -- is that Braden on the roof?!"

Why yes ... yes, that tiny black speck ON THE ROOF is my son.

Can you see him? I knew it was risky leaving him with the groomsmen! ;)

But, he came down off the roof to do his task of delivering the rings!

Awww, my handsome boy

Aunt Cathy and Uncle Mike!

Next up -- after the wedding -- dancing!

Love this!

2011-08-25T08:01:00.000-05:00

Daddy snapped this picture of the girls outside playing, with his phone.

California, Day 4 - Happy Birthday, Lilya!

2011-08-23T08:28:00.000-05:00

After swimming in the pool, we got dressed and headed down to this neat little patio outside the hotel. We had a pizza & cupcake party for Lilya's 7th birthday!

My dad & step-mom had arrived, too ... and Uncle Mike was able to sneak away from his wedding preparations for a quick visit, too!

Lil was thrilled to have cake!

We had to sing Happy Birthday quickly -- she couldn't keep her tiny fingers out of the frosting! :)

Karly & Braden have swarmed Uncle Mike

Braden, teaching the girlies some dance moves for the upcoming wedding!

California Day 4, Santa Monica Pier

2011-08-22T13:46:00.000-05:00

Friday, August 12 -- Lilya turned 7 years old! So, for one month, we officially have TWO 7 years olds, as Lils & Brades are exactly 11 months apart!

Since it was another beautiful day in California, we headed out with Nana & Nice Wolf to the Santa Monica Pier.

Family Photo in front of the Pacific Ocean!

The girlies, checking out the waves

There was a man there, with his parrots ...

Karly was hooked!

Ruby was a little leery at first ...

but she did great, GENTLY petting the bird.

Lil wanted nothing to do with the birds, and put herself as far away as possible. She watched Ruby and this bird very closely!

This green bird? Her name was Ruby!

This was the bird Karly held for a long time, he gave the kids kisses!

As we were getting ready to leave the birds & walk on, the man stepped behind Karly and squirted her arm with a water bottle. Because she still had a bird on her shoulder, she completely froze, and said, "EWWWWW!" It was really very funny :)

I definitely think the highlight of the pier were the performers -- besides the man with his birds, there were artists and singers. The little girls really enjoyed the music!

We played some carnival games ... ate some lunch.

We walked down to the end ... did you know the end of the Santa Monica Pier is the end of Route 66??

That guy that looks like he's going to jump? That's Nice Wolf ... and he didn't jump!

Afterwards, we headed back to the hotel and swam in the pool! This was the day I sunburned the top of my head -- oops! I guess I need to get a hat...

California, Day 3 - Disneyland!

2011-08-21T11:20:00.000-05:00

We woke up early again on Thursday, and checked out of our hotel. We were changing hotels -- moving up to the LA area, and staying in the same hotel my Mom & step-dad and my Dad & step-mom were going to be staying at, too. After all, the real reason we went to California was for my little brother's wedding!

But, we had a busy day planned, before we checked into our new hotel -- first, we had to go to DISNEYLAND!

In front of Sleeping Beauty's castle!

And since this was the day before Lil's birthday, we got her a Happy Birthday pin to wear around the park, so people would say "Happy birthday" to her all day!

We went on a few rides ... we went on the Pinocchio ride, then Dumbo:

Rubes & I on Dumbo
Brian, Karly & Lil were ahead of us (Braden opted out)

Then we went on Alice in Wonderland, which is another dark ride, but the girls were getting pretty tired of those.

Karly went to visit the White Rabbit, but no one was home ;)

After an all-important popcorn break, we went to our next stop ...

It's a Small World!

We were really impressed by the size and just how pretty this ride was! We had been on the Florida version, but this was even better, in my opinion!

Dad, Lil & Braden -- ready for the ride!

Inside, characters from Disney movies are interspersed with the dolls -- Lilo & Stitch were a favorite!

Then, we went to Toon Town, where Mickey & Minnie and their friends live. After the little kids had a turn 'driving' Mickey's car ...

we got in line to wait to meet the Mouse himself -- Mickey!

And this is where the camera battery died. So, the rest of the day is on a disposable camera, which we haven't developed yet -- but I can tell you, our other big celebrity sighting was R2-D2!!

I think the kids were even more excited about R2-D2 than Mickey Mouse!

Ruby fell asleep and actually missed R2-D2, I believe ... and it was getting pretty hot. We hopped on the monorail and rode to Downtown Disney & back, just for fun.

We also went on the Jungle Cruise -- which is full of animatronic animals and cheesy jokes, but is fun. I had forgotten Braden didn't go with us last time ... at one point, there were 'piranhas' in the water and Braden, who was riding up front in the boat, yells out, "Somebody get me out of here!!" Poor kid! He was fine, once I told him they were robots...

It was a long day, so we headed out of the park with promises of finding Nana and Nice Wolf at our hotel.

California, Day 2, Part 2 - The Boys Head to Legoland

2011-08-18T22:51:00.000-05:00

For years, Braden has wanted to go to Legoland California. He'd see ads for it in his LEGO magazines, look at pictures and videos on websites, and tell us how much he wanted to go there someday. Last week Wednesday, Braden's Legoland dream finally came true.

Braden loved hanging out with life-size versions of Batman and Darth Vader, made entirely out of LEGO bricks...

But his favorite LEGO creations at the park were at the center -- called Miniland USA. Miniland features various parts of the US (New York, New Orleans, Las Vegas, Washington, D.C., San Francisco and a few others) built to 1:20 scale, using over 20 million LEGO bricks.

The result for Braden? A couple hours of excitedly running around, examining LEGO creations closely, and yelling, "Wow, look at that!" every few seconds.

Braden checks out part of Washington, D.C. in Miniland

Running on to New Orleans and New York

Braden and the City That Never Sleeps

New to Miniland USA this summer is a new section that seems like it was created just for Braden: LEGO re-creations of key scenes from all the Star Wars movies, plus the Star Wars: The Clone Wars TV series. Braden was in LEGO heaven...

Soon after we left Miniland, we came across the Legoland mini-golf course -- which again was perfect, since Braden loves to play mini-golf but we rarely get time to do it. The course was fun, with little LEGO creations popping up throughout the course.

To my surprise, Miniland and mini-golf didn't even end up being Braden's highlight of the visit. That honor instead fell to something that hardly had anything to do with LEGOs, part of the "Castle Hill" section of the park, a huge playplace called Hideaways.

Braden poses in front of his favorite section of Legoland

For over an hour, Braden crawled through tunnels, climbed rope ladders, walked on wooden catwalks and slid down huge slides in this massive three-level playplace. There was thankfully just one entrance/exit, so all the parents could just wait there while the kids wore themselves out running and climbing and jumping.

And there was so much more after that... there was the water park, which got Braden onto a lazy river ride -- something he'd never been interested in before -- by being able to play with floating, oversize LEGO bricks while you float around the river. There was a bizarre thing called Pharoah's Revenge, in which kids fire foam balls at targets using stationary air guns -- Braden played in there for a while and then came out... with a black eye. He had apparently put his eye a little too close to where a ball was coming out. He wasn't really hurt, just a couple marks around his eye, but it made us wonder what he'll look when it came time for him to the ringbearer at his uncle's wedding in just a few days.

Overall, Legoland seemed to be tailor-made just for Braden. His sisters would have been bored with the park but it was perfect for him.

We spent a full day there, from their opening at 10am until about 4:30pm, breaking only for a couple snacks along the way (he had a huge breakfast, so I didn't push having an actual lunch there). Lots of families were leaving the same time we did... when we got our tickets we also received a little card stating that "Kids eat free at Legoland after 5:00" but my guess is that those families who actually make it that long at the park likely didn't show up right when it opened. Even with how much he loved the park and everything in it, it was Braden's idea to leave, saying he was getting tired. We stopped by "The Big Shop" -- a huge LEGO store in the park -- to get some souvenirs and then headed back to our hotel to meet up with the girls, eat dinner, and crash.

Baby News!

2011-08-18T10:56:00.002-05:00

We interupt this blog series about our trip to California to share a little baby news ...

First of all, at 19+ weeks, our baby is right on target and healthy!

And, he's a BOY!

(please feel free to suggest boy names!!)

California, Day 2 - Just us Girls!

2011-08-18T10:48:00.000-05:00

After our early morning trip to Target, the boys dropped us off at the hotel for an adventure of their own. I'll have to ask Brian to blog about their trip to Legoland!

But don't worry about us girls ... we had plans of our own. We had visitors!

We were so thrilled to get to meet Denise and Ella! We've known them online since Ella was a baby, but never had the chance to meet in person, since they live across the country. I'm so glad they took the time to come see us -- it was fun and Denise is just as wonderful in person as she seems online!

Okay, are you prepared for the cuteness?!

Ella hugging Ruby...

Ella hugging Lil...

Ruby, not wanting to be left out of the hugging...

Another big hug for Ella & Ru!

Yay! A picture of all 3 girls, looking at the camera!!

This was so cute ... When Denise fed Ella through her g-tube, Lil was fascinated. She kept looking for her own button!

Silly girls!

It was too chilly to swim at our hotel pool (which, of course was outside, since it was California!) but we had a great time just hanging out.

When Brian & Braden returned, we all had In & Out burgers, for my very first time! And they were a thumbs-up, all around... although Braden's still in love with the very cheesy quesadilla we got at the Mexican restaurant on the way to the hotel the day before.

Going to California! August 9, 2011

2011-08-17T14:43:00.000-05:00

I have a weird thing about not blogging that we're away from home, until we're home -- so I'm going to recreate our trip!

I got home from Texas and the National Down Syndrome Convention on Monday, August 8 -- washed my laundry and packed everyone up for our trip out west.

We were pretty concerned with how the traveling would go -- Lil hadn't been on a plane since we brought her home a year ago. When she flew home from Ukraine, she was a pretty sick little girl; we didn't know until later that she had an ear and throat infection. Thankfully, she didn't seem to associate that with the trip.

The kids really took it as an adventure!

Silly Rubes!

Braden & Lil, checking out the safety information

Karly & Ruby

We had 2 flights to get to Los Angeles, arriving mid-afternoon. We quickly got our rental van and headed south to Carlsbad, home of Legoland!

When we checked into our hotel and got settled, we started getting the kids ready for bed. Karly said, "Mom, it's only 6:40!!" and I told her, "That's 8:40 back home!" and then she ended up being the first one asleep!

The next morning, we were all awake and ready for breakfast when the hotel breakfast started at 6:30 in the morning -- 8:30 our time back home! We ran to the local Target to pick up some supplies, and got there at 8:00am -- I had to call my mom and tell her we are apparently morning people in California! I have been at our local Target when it was closing, but never as it opened!

More later ....

We're Back!

2011-08-16T12:33:00.000-05:00

Did you miss us? Did you even notice we were gone!? We were in California for a week (after my solo stint to Texas for 5 days!) so I have much to fill you in on!

Later.
After the laundry is done!

But ... here's a sneak peek at Braden's dream come true:

Deep in the Heart

2011-08-07T22:49:00.000-05:00

This weekend was my first National Down Syndrome Convention. And I'll tell you this -- I want to go EVERY year now.

I knew I'd be sad I didn't have the girls with me, seeing all the other kids around. What I didn't anticipate was how much I now look forward to bringing them here when they are older -- teens, young adults. There is SO much for the older children to do, teaching them to be self-advocates, just partying and enjoying time with their friends. There's also stuff for Braden to do, too, as a sibling. I'm not sure how much Karly would be into it, since she's not really a fan of crowds, but it's still a really cool atmosphere.

Tired ... traveling tomorrow ... more later!

Nervous Nelly

2011-08-02T10:51:00.001-05:00

This pregnancy has me pretty freaked out. Not constantly -- just every few days, I wonder, "Is the baby still there? It is okay?" It makes me act all goofy and odd when people congratulate me -- I think, "Oh, well, I'm pregnant FOR NOW..."

I'm 17 weeks. I'm past the "highest risk of miscarriage" part ... and yet, I can't forget we lost Lydia at 37+ weeks.

I expect I'll feel better when I can feel the baby kicking more regularly. I feel it on occasion, but it's still pretty fluttery, and not consistent. I had a lot of fluttering this morning, so I think I won't worry too much for a couple more days. Either it's the baby, or it's the after effect of those zesty pickles...

Brian thinks the fact that I ate an entire jar of pickles yesterday is a good sign, too. He's probably right!

My next appointment is August 17th -- with ultrasound! I wonder if baby will cooperate and tell us boy or girl? Any guesses?

Sign of the Day!

2011-07-29T10:22:00.003-05:00

Okay, this may be my most favorite sign ever -- I looked it up and it's FUN to do. Even the signing savvy guy looks amused ...

This is for my friend, Mel, who after two surgeries in the last two months and (I'm assuming) a lot of anxiety and worrying -- has been *Officially* declared -- Cancer Free!!

YAY!! CELEBRATE!

So happy for you, Mel! Let me know when you're feeling up to going out to dinner to celebrate!

Karly's Cancer Update - 3 years later

2011-07-28T21:59:00.000-05:00

Karly & I drove down to Children's Hospital in Milwaukee yesterday for one of her routine visits with the oncology team.

Would you believe it has been:

3 1/2 years since she was diagnosed with cancer (Nov 2007)
3 years in March since she finished chemo
3 years this month since she finished radiation treatment

Amazing. It does seem like a lifetime ago, but still ... it also seems like it JUST happened. (If you're new here, I wrote up a brief recap once of Karly's cancer journey.)

Anyway, they no longer do CT scans on Karly, but they do ultrasounds (to minimize additional radiation exposure). The ultrasounds were all great! They're tricky though -- one requires her to have eaten no solid food since the night before, and the other she has to drink a TON of water so her bladder is full. So as soon as she's done she has to use the restroom -- and then we have to eat!

After a quick lunch, we were off to get her bloodwork done. She's such a pro -- she doesn't even need me to go back with her. It was very quick, they just drew one tube to check electrolytes and minerals. Would you believe her electrolytes were great? She was very hydrated ;)

The number one thing they look for with the bloodwork is her calcium level. The type of tumor she had presents oddly -- with high levels of calcium. That was their first big clue that it wasn't a benign teratoma (as we were hoping), when the tumor was first found and treated.

So yesterday we met with the after care team. It's called the "Next Steps" clinic, and for children like Karly -- who are done with treatment and looking good and moving forward. We met with a nutritionist, psychologist, social worker, and a nurse practitioner. They all think she's doing great.

It was interesting, too -- they gave me a little business card sized summary of Karly's treatment history. Now we know what her total doses of chemo and radiation she's been given and can share that with doctors in the future. Not sure when it will come in handy ... but it's interesting.

We knew already what side effects to watch for from the chemo, and the only 'red flag' we've hit so far is with cardiology. One of the chemo drugs is notorious for causing issues with the heart. At Karly's last echo (in January) the cardiologist said her heart is okay, but the vigor of the pump is not the same as what it was at her previous echo. For now, it only requires a watchful eye and follow-up care.

So, yesterday was a long day, a gray and rainy day, and thankfully very dull. I love it when we get through a whole day of clinic and there are NO SURPRISES!